OT: Pancreatic cancer forum?

Hi guys,

My dad, who is 81 but active and in good health has had IPMNs, precancerous cysts, in his pancreas, diagnosed in May 2014. He decided not to have surgery to remove the pancreas (whipples surgery) three years ago as this surgery was going to be life changing as multiple organs including the spleen need to be taken out at the same time. The Whipples surgery was the recommendation of the multidisciplinary team that looked at his case at the time.

Instead he has been following an approach of active surveillance using the CA19-9 cancer marker. His baseline in 2015 and 2016 was 12 (where the acceptable range is upto 37). His levels are now 36. People with advanced pancreatic cancer have levels in 5 figures.

He is now torn about what to do, my sister who is a doctor, hates the Whipple, doesn't think it's right for him because of his age. I think that there are many people these days getting the Whipple at age 80+ and my dad is a natural fighter. Ultimately it's a qol vs length of life decision and the only person that can make it is my father. I thought the right pancreatic cancer forum could help and I thought I would come here looking for advice on where to look and on how I should help my dad. Your thoughts are welcome.

An

My wife's brother had pancreatic cancer, but much younger (50). They began a Whipple for him, but closed him up before doing anything when they found widespread metastases. He proceeded with chemo from that point on, with some success.

That's a tough one. The Whipple surgery is hugely invasive and life changing. I'm not sure where I'd fall on doing that one if I were in my 80s. For me, personally, I think I would not do it. But everyone has to make that very personal decision.

The only advice I can offer is that whatever you do, whatever you say, make sure it's in HIS best interest. Honor his wishes. We would all like our loved ones with us forever, but again in my humble opinion we need to respect what they want to do, aggressive or not.

This is true of any kind of cancer, really any medical condition.

I have a few small branch type IPMN cysts that are about 1cm. Generally, need to really worry if they get over 2-3cm and especially if they are found in the main duct. Regardless, if I get to 81 Whipple surgery would not be on my radar at all. That's as major as it gets, not just the surgery but because of no longer having the pancreatic enzymes to digest food, the infection possibilities from not having a spleen, diabetes...etc.
Like all procedures, the after effects of surgery vary greatly, but this one has the real potential to cause many types of other big problems. Also, from my understanding the CA-19-9 is not very accurate and can vary greatly. He has to be totally committed to a drastic change of life before doing this and I would support any decision he makes.... but first and for most, go enjoy!

Thanks so much guys. I really do appreciate your thoughts, it is not an easy situation.

I will read all the links that you have provided. Gear, my dad has main duct IPMN and the last time he checked the largest cyst was 2.4cm. This was in 2014 and that's when the multidisciplinary team recommended the Whipple, despite his age. My dad decided against it and I think he made the right decision, he has has three years of very good health and still does, apart from the increase to the top-of-the-normal-range CA19-9 marker.

My sister and I are urging him to make a decision on surgery/no surgery, if he is not going to have it then we don't feel that periodically checking the CA19-9 marker does anything but bring confusion. My sister is very fully aware of the outcomes of the surgery as a internal medicine specialist which she wants him to fully understand and all we both want really is for him to make an informed decision.

I adore my dad, he is my hero and my inspiration. Like anyone here with a loved one, I don't want him to die and I don't want him to suffer, he is a man enjoying his full and active life and I do want him to have that full active life for as long as possible. JackH I will buy that book.

An

Thanks Ken for the link.
I watch my parents getting older and their friends keep dying around them.
Four funerals in the last month alone. It's tough getting old on so many levels.